DENVER — Here’s how it sometimes works at the Capitol: No politics, no one working angles. Instead, there were constituents experiencing a problem that needed solving and lawmakers who worked together to solve it. The result is that very soon children with autism in Colorado will be able to receive the kind of longterm care that can transform their lives and the lives of their parents for the better.
Cari Brown, her husband, and their five-year old son Craig, who is on the autism spectrum, moved to Fort Collins from Utah in 2013. In Utah Craig had won a literal lottery and was receiving Applied Behavioral Analysis — intensive therapy for autism. In Colorado, insurance coverage for autism care has been arbitrarily capped, which meant that the therapy Craig was benefitting from would be slashed.
“My son was going to lose as much as 70 percent of his therapy hours,” said Brown.
Ken Winn, chief clinical officer at nonprofit Firefly Autism in Denver, said the way the law works, children can receive $34,000 a year in therapy, but that amount drops to $12,000 once they turn nine.
“Those caps are arbitrary, they’re not based on medical need. Many of these children need more care than that,” he said, adding that research recommends as many as 40 hours a week of the behavioral analysis therapy.
Winn has been providing the therapy for more than 20 years. He says that, with intense early intervention, many kids on the spectrum not only go on to lead independent lives but they’re also able to tackle regular coursework in school without the need of a special education plan. Craig is on track to be one of those kids.
“Craig was nonverbal when he started ABA therapy,” said Brown. “Within a matter of months he’d gained 500 words.”
Though Craig is on a specialized learning plan in public school now, Brown says that by next year’s evaluation he’s slated to fully rejoin all standard classroom activities.
“Friends and family say it’s an absolute miracle that Craig has gained these [verbal and social] skills,” she said. “But the real miracle is that he was able to access medically necessary treatment.”
So, why the caps in coverage?
In 2009, Colorado was one of the first states to pass a law requiring insurance companies cover autism care. It was considered a great step forward in the autism community, though compromises were made — in the form of coverage caps — in order to get the legislation passed.
Brown has brought the issue to the attention of her lawmaker, Sen. John Kefalas, D-Fort Collins, and now the level of care Craig has enjoyed is likely to become a given for every kid on the spectrum whose family is covered by private insurance.
“We love it in Colorado. So I decided it was easier to get involved with the legislative process than to move again,” said Brown of her decision to reach out to Kefalas. “We really just fell in love with this community.”
Last week, the state Senate voted unanimously to pass Kefalas’s SB 15, a bill that removes the coverage caps on medically necessary therapy. Health insurers will have to cover medically necessary treatment for autism in no more restrictive a manner than they cover physical health care.
“We’re making sure that these kids get access to the treatment they need so that they can grow into fully functioning adults,” said Kefalas, later adding that he was thrilled to see the measure get such strong bipartisan support in the Senate.
And SB 15 isn’t the only law in the works at the Capitol that will expand access to autism treatment. Sen. Kent Lambert, R-Colorado Springs, says the joint budget committee is working on a measure to make behavioral analysis therapy more readily accessible for kids on Medicaid as well.
“There’s a waiting list of about 300 people and a cap at 75 individuals that can be covered [for ABA therapy under medicaid in the state],” Lambert said. “The JBC bill… will increase medicaid coverage for young people affected by this between the ages of six and eight, which will give them a little bit more coverage and eliminate the wait.”
Winn, who testified in favor of both bills, said it’s high time that Colorado made moves on treating autism.
“I think Colorado is on the brink of breaking out of the old way of treating children with autism and becoming a leader, but we need better funding and care that isn’t piecemeal,” he said.
Winn pointed out that even though the expanded Medicaid coverage the JBC is considering would cost $10 million next year and $19 million the year after, the state would still be looking at a long-term savings.
“Research indicates that if you can provide enough ABA therapy during the first three years of life there’s a 90 percent chance of what we call recovery in the sense that the child no longer meets the behavioral criteria for Autism Spectrum Disorder,” said Winn.
He added that in Colorado, where the autism rate is one in 85, the state stands to save $2.5 million for every child that doesn’t end up needing specialized public education.
“Some of the cost savings are hard to put a price tag on, like keeping a child in their home,” said Winn. “But I can tell you that keeping them out of group homes saves hundreds of thousands of dollars a year and there’s also cost savings in preventing hospitalization and incarceration.”
A Child with ADS receives in-home therapy. Image part of public domain.
Correction note: this article incorrectly stated that Craig received ABA therapy in Utah due to a lack of coverage caps. In fact, it was because he won a lottery for care.